Autism · My world

A Note from the Edge of the World

In December of 2004 I sat down and wrote this in one sitting.  I have left it as is except for minor editing for grammar and clarity.  We had begun to see a new psychiatrist and to medicate Rachel for her autism after having been very resistant to that course.  When I wrote this I thought I was at the end of my rope,  but I managed to hang on one full year more before we seriously considered a placement option for Rachel.

 Part two of this is here.


What am I to do with Rachel?

Rachel is my severely autistic 11 year old daughter. She is a mix of love and frustration, anger and joy, gentleness and fits of nearly uncontrollable aggression. She is a nearly constant source of worry at this point. The road thus far with Rachel’s autism has been bumpy and heart wrenching.

At the age of two Rachel was diagnosed as autistic. This was so hard. While I knew something was wrong I don’t think I realized what wrong was going to mean. We enrolled her in early intervention and started working on behavior modification and picture communication systems. Each year her IFEP and then her IEP would set goals, seemingly reachable goals, only to draw short with them. We would find temporary sources of hope Secretin would work, or maybe it would be a dietary change, a new communication system or perhaps a new style of therapy.

Simple joys that other parents experience in course, joys I have experienced with my other children, Rachel simply skipped. The delight of those simple preschool acquisitions learning colors, shapes and animal names was very slow and difficult. Hearing the happy words “I’m three years old” or even “I love you” became dreams lost. Rachel never has and likely never will learn to read independently, she can not speak in complete sentences.

“Milestone” ages, “Critical” ages have come and gone. Starting therapy by age 3, speaking by age 5 and language by age 9 were each pointed out as critically important. We started therapy at two and a half, she was saying words at 5 but not in a seriously communicative way… not to worry we were told there was still hope. By nine it was becoming obvious that those milestones were gone, not coming back and that Rachel’s “severely autistic” was just that – severe.

Since the beginning of the adventure we have dreaded the onset of puberty. The hormones, the physical changes, possible aggression, possible worsening of symptoms frightened us.  We had heard of autistic children becoming physically aggressive as teens.  All the professionals knew this but had little advice to offer about how to avoid it or what to do if we suspected it was developing.  When Rachel would have meltdowns that involved hurting someone they were usually treated as isolated one off incidences.   

This has been my personal nightmare. Few people outside my immediate family know how difficult raising Rachel has been, in reality I think only my husband has a genuine idea of how hard it has been. My parents, his parents look in on our world from the outside. They simultaneously have not seen aspects we hide and yet they see things we do not.

They are not completely aware of how many times we had to wash Rachel’s bedroom walls when she would smear the contents of a soiled diaper on them. They are not completely aware of how viciously she can attack. The screaming fits if the slightest thing doesn’t go her way. They haven’t had to deal directly with the panic when she “elopes” from the house and disappears to be found at a neighbor’s, or even worse running up the street.

At the same time they grieve for us. For how altered our lives are by having to constantly accommodate the fallout from autism. Our home has locks on several cupboards. Not just normal child safety locks, but padlocks. All the exterior doors in our home have double keyed deadbolts to prevent escape and Rachel’s bedroom locks from the outside, her windows are fixed so they can not open wide enough for her to get out through them, the only pieces of furniture in her room are a dresser and a bed, the carpet had to be removed. In ways it is like a small prison at times.

Rachel’s world has shifted over the past year; it has become much smaller. She has always had temper outburst, but with her increase in size and approaching puberty she has gone somewhat out of control at times. Rachel has always enjoyed the mall, but now we can’t risk going. She had a “meltdown” last time we were there where we could hardly control her; she “lost it” because we wouldn’t purchase five books from the books store that we already owned. This year’s pumpkin patch trip was all but a disaster. She wanted a cookie that she couldn’t have and threw herself to the ground crying.

It is one thing to have a five year old on the ground wailing and trashing, or to drag a seven year old from a store in tears, but it is very difficult when the child is 11 and is 80% of your size. Aside from the social discomfort, the stares and hushed comments there is the fact that this young person is totally focused on something, has a higher pain threshold then you and is oblivious to the consequences of their behavior. No danger is seen, no motivation is enough, and their sole focus is on the object of their momentary passion. That book, the cookie, the swimming pool… no amount of argument or reason will dissuade them and your only recourse it to bodily remove them from the situation.

What this means in real terms is we have all but stopped taking Rachel places. She can still manage the zoo and our summer hikes but no more malls, no more pumpkin patch, no more farmers’ market or library. While it is bitter enough that Rachel misses out on these fun things it is made 5 times worse by the fact that her siblings miss them as well.

Her world has also altered in another significant way. Both her violent outbursts and her capacity for causing real hurt have increased significantly. These violent outbursts are at time predictable but more and more they seem to strike out of the blue. Some internal expectation isn’t met and Rachel explodes. She will violently strike out at whoever is the nearest object of her unhappiness. Usually this is an adult, a parent or teacher… but more and more commonly the object of her aggression is simply whoever is closest. This could be a classmate, a sibling or even a pet.

Before the past year Rachel had rarely gone after a younger sibling, perhaps three or four times total. She had in fact always been excessively careful of the smaller children. It was not uncommon to see her upon being sent to her room for a “calm down time” stop her blind run, carefully walk around the sibling in the way, and then continue on. Recently she has completely reversed this going out of her way to push over or even pinch a little one. Now I find myself answering questions like “Why does Rachel hate me? Why is she so mean? Why does she hurt me?” They have learned to avoid her at good times and run from her when they hear her getting agitated.

Attacks against her older sister have become even more brutal. We had to rearrange the seating in our minivan because Ashley was literally being clawed. Her forearm was covered in marks from where Rachel had tore into her whenever we turned a way which was different from the one in which she wanted to go. Most commonly when we would turn toward our home instead of going to McDonald’s even though we rarely went to McDonald’s and we went home every day she for some reason expected us to go to McDonald’s and would become frighteningly agitated when we didn’t. Even rearranging the seating has not provided much relief. Now instead of going after a sibling she will attack the driver. Sometimes she will pinch other times she will actually kick the driver. The disastrous possibilities are obvious but the only other option is to seat her next to a helpless sibling. Needless to say the only time Rachel is in the car now is when it is necessary.

Her world diminishes in size as we are no longer able to control her behavior in a given situation. Our world becomes smaller as well as we are no longer able to do things as a family since Rachel’s behavior is too unpredictable. There has been no real sudden change but rather a small series of accommodations, each one small enough that it is hardly noticed.

Looking back we have always accommodate Rachel. She has in a sense trained us. We can not, and have never really been able to stay in a hotel room with Rachel. The few times we have she was very young, and even then we were absolutely terrified that she would escape. Spending the night with out of town relatives basically means one of us must “keep watch” all night. One of us will be up very late; the other will wake very early. It is exhausting. The only relatively safe overnight location we can get away to is an isolated family cabin.

A family get together is an exercise in endurance. Personally feel very responsible for anything that Rachel “gets into”. I find myself hyper-alert the entire time, constantly physically and mentally checking and rechecking where Rachel is, worrying continuously that she is getting into lipstick, deodorant, sugar or Crisco, that she has broken something, slipped out of the house or has hurt someone when they try to keep her out of something, or if they won’t let her do something she wants, watch the TV like she wants or play on a computer.

Rachel has no concept of physical danger. She will do what she wants when she wants unless she is stopped. This might mean doing things that are relatively safe, but frightening to us and potentially disastrous. This summer, while visiting her grandparents at a resort she left the condo and walked about two blocks to the pool. She walked into the club house and hopped into the water. She was in reality safe enough but it had the potential for real disaster. Not to mention the panic we were thrown into when we discovered her missing.

When she is angry she has no concept of cause and affect. On most occasions when asked to unload the dishwasher Rachel is compliant and will do a very fine job of it. If she is not in the right mood she will throw a fit, which on occasion has included throwing the dishes about the room especially at the ceiling where they are just as likely to come down on here own head as anything else. A broken window in my bedroom presented an irresistible escape route from the house, despite the fact that there were still sharp pieces of glass in the window frame and the large prickly shrubbery in the way.

In spite of these very depressing turns this year there have been some bright spots. Rachel has been so verbal at times; she has expressed a real interest in written language. There have been many times where Rachel has been gentle beyond description and those long awaited words “I love you” (said as “I duhv you”) have been heard. Then there is Mass.

Rachel excels in Mass. She sits nicely, attends to the things around her, she stands and knells, sings and folds her hands to pray, she stretches out her hand to offer complete strangers a hand shake at the sign of peace. Most importantly she patiently waits in line to receive the Eucharist at communion, so reverently, so expectantly. She never reaches for a second host, she never pushes ahead, she always is a model of what a young girl receiving Holy Communion should be, and with the exception that she doesn’t say “Amen” at the reception. It is enough to make me weekly re-believe in miracles. The only way can find to describe it is that God touches Rachel through the Mass in ways that negate the need for language. Mass speaks to Rachel in the soul’s native tongue.

The Roman Mass with its ritual and predictability is something well suited to Rachel’s strengths. Each week it is a nearly identical scene. Remarkably she can easily tolerate changes in Mass, different priests, different music, second collections; special events that swell the attendance at the Mass don’t upset her in the way changes in other venues do. Maybe it is because the changes are within a predictable shell and therefore easier to accommodate. People are accepting of Rachel in our parish. Rachel is not the only special needs child in regular attendance. Our former priest was very accommodating and helpful in making us feel welcome and at home. Now after severeal years those who attend our parish are familiar with the quirks that occasionally manifest themselves from Rachel or another special needs child. It is one place where she is not “out of place” no one stares for long at her at Mass, they have all seen her a hundred times before.

Whatever the reasons may be, most of them probably only know to God and to Rachel Mass works for Rachel. Not to mention how much she loves her donut afterwards.

At home we have begun medication in an attempt to help elevate Rachel’s issues, especially the compulsiveness and the aggression. This has felt like a failure to me on many levels. That magic number of “age nine” has passed. Puberty looms ahead and I am quite honestly so powerless and worried that medication feels like a last desperate pitched battle before the dark forces of autism engulfed our position and we loose Rachel completely. In a way he progress the past year has seemed like her last stand; a spurt of growth in hopes of staving off a blasting winter.

I worry that medication will be no real help and we will be forced to sedate her in order to keep her manageable or send her to live in a group situation where she could be better monitored and where she would not be a danger to herself or us. That is of course my other fear. The fear that one day in a fit of anger over some small thing Rachel will do something that will be a real harm to someone else. That she will throw a plate and hurt herself, she will pick up a knife and hurt her dad, she will kick my shoulder while driving and cause a wreck or that she will severely injure a sibling.

Between living with the constant fear that today will be that tragic day and the horrible sense of loss of Rachel leaving to live elsewhere I am torn. The truth tears at my heart and soul. To send Rachel away feels like giving up on her, selling off any chance she has at a normal life. To keep Rachel here feels like condemning the whole family to a prison complete with the terror of not knowing if Rachel will be sweet or hurtful at any given moment.

In all fairness Rachel’s outbursts, while a daily occurrences are really limited. Most outbursts are not violent and most are very short. The most violent ones only last a few minuets and are not daily occurring only three or four times a week. But they are so frightening and violent when they do occur that I am willing to consider alternate living situations or sedation to avoid them.

That is what feels most like a failure to me. I have burnt out. I have gone beyond what I can understand and what I can endure. In reality this war is already lost. We are just waiting to see what the result of this last battle is in order to settle on the terms of surrender. Rachel is the primary casualty. We loose her either way. Either she is sedated and lost to me in a chemically induced fog or she is sent away. The self loathing that such a realization inevitably brings is unexplainable. If I had only done more when she was younger, if I had been more disciplined, more organized, more prayerful, wealthier, more proactive… if I had been more then I might not be looking at such desperate options now.

My more objective mind says “I am who I am and I did what I could with Rachel within the limits of who I am there is nothing more I could have done” but self-flagellating part of my brain and heart can’t let go so easily. It feels like a failure. I who can not accept failure, I who will not fight a battle I can not win have found myself in a war I couldn’t win from the beginning and yet I couldn’t stand to loose. So instead of reaching out for better resources earlier I have hunkered down behind my little parapet and hoped to somehow make it through. And now I am done. The siege is over and I have no resources left to hang on any longer.  And the worst part of it is that I now can see that the resources I would have needed never have existed.

The deepest reality is that I am done. I can not handle my daughter’s needs and behaviors without much more assistance any longer. I am tired of being hurt by her, embarrassed by her behaviors in public, watching her hurt others, worrying about her running out of the house and into a neighbor’s home to steal cookies or candy from their kitchens or worse taking off and being hurt. I am tired of trying to stay one step ahead of her, out of her way, predicting the unpredictable, wakening suddenly worried that a door has been left unlocked. I am tired of living locked up in my own home because of the overwhelming needs of this one person.

I am in fact angry that I have spent nearly a full third of my life dealing with things you couldn’t pay someone enough to deal with for more than a few months. I am depressed that I have to constantly consider nearly every action in my life in the light of severe autism. I am sad that I can’t take my children camping at a state park or go to an amusement park or even let a dependable sixteen year-old baby-sit for a few hours so my husband and I could go out with my parents. I am worried that no matter what I do it will never ever be anywhere near enough. I can not fix Rachel. I would if I could, but there is no fixing this. Some things are just beyond the control of anyone.

But Rachel, poor Rachel, who can be so sweet and loving, one of the most lovely children I have ever seen. Who enjoys the Aristocats and loves to have her beautiful golden curls brushed and styled. Rachel who is such a delight, who so loves birthday cake and Halloween. She jumps with joy over simple things like cookie dough and Christmas lights. Rachel who will come and ask for hugs and tickles and who wants to snuggle with her Piglet under about fifteen blankets. I can’t fix her and I feel like every week gets more desperate. I will lose her. Puberty is hard enough, autism is cruel the two combined have proven impossible.

When Rachel was diagnosed there seemed to be a world of support. Web sites dedicated to helping parents with autistic children, support from the schools, every where someone telling us how much you needed to get your children into therapy and how much hope there was. Not to mention the cure de jour that would regularly surface to lift up a little unreasonable hope. Where has this all gone? Am I the only defeated parent out there? Is my child the lone casualty – all others miraculously cured we alone still struggle with the most basic of communication and impulse control?

I have seen a total of two articles on-line about residential placement both of them addressing the concerns of parents with adult children with autism. The state resources seem to all be focused on preschool and early elementary resources. Our insurance will not cover treatment for autism after age nine because, I was told, “there is no efficacious treatments after age nine and no cure”. The psychiatrist told us the state of mental health care for children in our state is “dismal”.

I once describe Rachel’s diagnoses with autism as being left in a large fog-enveloped meadow. With no idea where to go or what to do I could only take Rachel’s hand and begin walking. For a long while it seemed as though the fog was lifting, we entered the forest and walked on where the new found path lead us, doing what we were told, fallowing along where “they”, the school, the doctors, the therapists, said to go. Now I feel almost betrayed. I feel like I am standing with Rachel on the edge of a cliff overlooking an ocean of uncertainty. Now instead of seeing nothing I see everything for miles and miles… all of it empty, stormy ocean and sharp rocks and grinding waves. I see everything but a safe way down. I would gladly turn Rachel into a bird, let her fly away to dance on the wind. I would turn her into a sea lion or a dolphin and let her rejoice in the freedom of the water, but I can’t. I have no magic, no map and no way to know what is best. I am left with the savage question… what do I do now and how am I going to live with myself afterward?


Autism · Catholic stuff · My world

About Carol Race from someone who knows her.

The Parish of St. Joseph In Bertha, Minn has barred Adam Race from attending mass because of behaviors stemming from his autism.  I honestly thought I was done blogging on this yesterday, having also blogged on it the day before, but then I received a heart-felt comment from a priest who knows Carol Race personally and wanted to post his take on the issues.  While his additional information hasn’t changed my personal feelings on this story I want to share them with you in a spirit of being fair, and also with the recognition that I do have a horse in this race so to speak and I don’t want my feelings clouding what is right and true. 


My latest update on this story is here.

Would those of you who are interested in this story please remember Fr Showers, Carol Race and Adam in your prayers.  I know this is a difficult time for all of them.  I pray that God blesses them all with  peace and fortitude and understanding in discerning what is best for Adam.

Below is Fr. Robert G. Showers comment to my blog post “A little more about Adam Race” followed by my response to him.

Dear Darcee,

Thank you for this posting. I do hope that your anger has subsided. You seemed especially upset that Mrs. Race “spent the day lining up legal help.” I allow myself gently to point out that the pastor and the parish council are the ones who chose to unleash the media storm – they chose to go ahead with a restraining order and themselves reported the fact to the press, knowing full well the circus that would follow. After having been threatened with jail time and with news cameras already in her face, Mrs. Race was well advised to spend the day lining up legal help. The parish had lined up their legal help well in advance.

And she was advised. Mrs. Race took this step on the advice of advocacy groups for the handicapped of which she is an active member.

I know Mrs. Race because we studied theology together. This mom in Minnesota is actually a professional Roman Catholic theologian who studied dogmatic theology under the now Cardinal Archbishop of Vienna, Christoph von Schönborn. Her love for the Church has been constant from her early work on the Catechism of the Catholic Church while she lived in Switzerland to her years as DRE in the Twin Cities to recent years, where she has served her parish in many capacities. She began writing about the place of children, including handicapped children, in the heart of the People of God from way before she could have known that she herself would become the mother of a severely autistic child. As the godfather of one of her children, I have followed this family for many years from my friary here in Scandinavia.

Please believe me, that it pains Mrs. Race a great deal that the Catholic Church is made to look bad. It is true that the parish “offered alternatives” – but all of these so called alternatives were ways to keep Adam out of the church, for example, they offered special Masses just for him in private at home, closed circuit transmissions of the Mass directly to his home – and other fanciful ideas designed to spare people the sight and sounds of a handicapped boy in church.

In my heart, I pray that I am wrong when I suspect that the real issue is fear. Some adults in that parish (including the priest) seem to be afraid of this autistic child, a fear born, it seems, of ignorance and prejudice. I feel like I am reading a novel about the 13th century, but fear of “odd” people strikes deep – in this sense, this truly IS an issue of faith.

I thank you for your insightful and honest comments. You have a good blog here.

Peace and all good,
Fr. Robert G. Showers OFM Conv.
guardian of Consolatrix Afflictorum Friary in Roskilde, Denmark

Continue reading “About Carol Race from someone who knows her.”

Autism · Catholic stuff · rants

“I can’t discipline him out of his autism”

If you have come here today because of the Adam Race story and are looking for other information about autism and Catholic life I have two other articles you might be interested in:

Can My Autistic Child Recieve Communion
Autism and Catholic Life

image of St. Dymphna,
patroness of  nervous system disorders

“I can’t discipline him out of his autism”, said Carol Race, the mother of an autistic teen boy.  She feels her priest expects that she should be able to do so.   I suppose that is possible it is what the priest is thinking, it could also be that he is simply at the end of what his parish can reasonably accommodate.  The Race’s have been attending the same parish since 1996 with their five children and now the family has a restraining order against them to keep them from bringing their six foot tall, 225+ lb, 13 year-old son to mass.

The Star Tribune in Minneapolis & St Paul, MN has two articles on this story.  I would like praise the authors of the articles for the fair and balanced way they handled the stories.  While the headlines: Church bars severely autistic boy from mass and  After warning, family of autistic teen attends different churchdefinately are there to draw attention the articles themselves tell the story in an even handed way that I am unaccustomed to seeing in the main stream media when it reports on anything having to do with the Catholic Church.  Reporters Pam Louwagie, Curt Brown and Laura Pabst could have talked to the parents and the disability community advocate/activists folks and come away with some screed about the horrible Catholic Priest who won’t let this poor family come to mass.  Which would have been much more sensational and not true and with the tragic effect of putting in the minds of parents with autistic children that the church doesn’t want them… which is also very much not true.

A careful reading of both articles paints a sadly familiar story.  This family has been attending mass in the same parish since their teen was a baby.  Week in and week out with their five children, drawing strength from the Mass, their faith and community.  In 2005 Carol was given an award by the Diocese of St. Cloud “for her efforts to encourage families with disabled children to attend mass” and even in this current situation she says, “The church isn’t bad. But it’s what some individuals do within the church” and that she hopes this doesn’t reflect badly on the church as a whole.

I feel very badly for this family.  The articles talk about how their son, Adam, gets something out of the mass.  That he responds to the ritual and the routine.  I can attest with my own daughter how true that can be, how calming and wonderfully spiritual mass can be to someone with autism spectrum disorders.  But I suspect the parent’s are not being completly objective.

Their current priest has been serving in this parish for three years; last June he went to visit the parents.  There were concerns with their son’s behavior.  The parish says it offered services through Catholic Education Ministries and Caritas Family Services which the parents refused, that they eventually offered mediation to convince the family not to bring their son to mass and finally had to use a restraining order.   Why would a parish that has been serving this family for over a decade suddenly go from welcoming them to getting a restraining order in the course of a year?

The affidavit filed by the parish states that Adam would spit (his parents claim he made spitting faces), that he urinated in the church (the parents agree he is sometimes incontinence), that he hit a child, that he knocked over elderly pairshioners as he blotted from the mass (mom and dad claim he bumped into them), and on Easter he ran out into the parking lot and started their family car then got into another car and revved the engine (the parents say he is drawn to engines).   The diocese says the restraining order was a last resort, the parents are understandably upset, and the advocacy person, Brad Trahanm (RT Autism Awareness Foundation)  proclaims “It’s unfathomable and concerns me that we’ve taken a situation with special needs and we’re making it into the criminal matter. ”

It is obvious that there is a lot of disconnect here.  The parish sees things one way and the parents an other.  The news reports this as though it were a straight forward two party disagreement, but it isn’t at all.  On one had there are the parents.  They obviously feel serious enough about their faith to attend mass every week (presumably) with a severely autistic child.  And not just that, but they have helped other parents of disabled children by encouraging them to take part in the Mass and their parish’s community life.  Mass is important to the family.  When you are taking a child to mass and you sit in the back pew or the cry room because you know your kid might well have a disruptive meltdown, you bring cloth restraints, you leave during that last hymn to “avoid interacting with other parishioners on the way out” and you sit on your child to calm him — you have a problem, obviously, but that also speaks of a great deal of dedication.  It is terribly unfair to ask this family not to come to mass.

The priest has a responsibility to serve his entire community and I suspect he has heard a lot about the situation from other parishioners.  If parent’s of small children are worried about taking their toddlers into the cry room because there is a boy as big as a man having a meltdown in there, or if an elderly parishioner is afraid to get to close to the kid because he might get knocked down, or you have a teenage boy who “once pulled an adolescent girl — an exchange student staying with the family — on top of him, grabbing her thighs and buttocks” in Mass — the priest is going to be expected, by the entire congregation, to do something.  That something is not going to be to “educate” the community on autism to explain away things like spitting, urinating and running out into the parking lot to rev up the engine of another parishioner’s car.   It is terribly unfair to ask the entire parish to come to mass and have to worry about what Adam will do next.

Then there is the larger community of people with disabilities and their families.  We need to have access to the Sacarments just like any other family.  Already there are too many families not attending mass with their child with emotional disabilities for fear of what others will think.  In the news article another parent, Tim Kasemodel, asks “What are we supposed to do, literally lock our kids away so no one has to see this for the rest of their lives?”   There are a lot of autistic children out there and we will see more and more of these kinds of situations as they grow and hit puberty.  The Church needs to be able to address our families’ needs in a substantive way.

As sad as it is, as much as I hate saying it, the priest seems to be in the right in this situation.  He has the responsibility to make sure that every parishioner can attend mass and feel safe.  While small noises and even a very occasional out burst are acceptable and understandable it sounds like Adam’s situation is beyond that — and perhaps it is of note that a judge agreed.   The boy is big, intimidating and from everything in the article, even the parents’ own statements, they can barely control him.  They have been lucky so far.  Adam could have put the car in gear and killed someone, he could have knocked over an elderly person and seriously injured them, the parents of the child he hit could have filed assault charges.

Puberty and autism can be a cruel mix.  The added size as the young person approaches adulthood, the hormonal changes that can lead to mood changes and aggression, plus the lack of impulse control and the lack of empathy so common with autism can create a situation that is very dangerous.  The child is almost over night large enough to do real harm, unpredictable and sometimes aggressive, with no impulse control and no understanding they they can hurt others, or even that others can be hurt.   I have been there and lived this.  Our family made the very difficult choice to place our daughter in residential care when she became physically aggressive with her younger siblings.  I know other families have faced a similar situation and made the same choice and still others who have managed to deal with their child’s behaviors in home.  Every situation is different, but my guess is that about a year ago Adam Race’s hormonal changes and growth made his attendance at the mass his family had been taking part in for 12 years too difficult for the parish community to manage.

I wish there was a good solution that would allow the family to bring Adam to mass.  But I am afraid that it is in the end asking too much of the community.  I doubt that any amount of education about autism would make a frail, elderly man feel safe if he sees six foot Adam bloting his direction.  I don’t think there would ever be enough explanation that would make a mother comfortable taking her toddler to the cry room if the Races were there with their son in flannel restraints, even if the restraints are calming to Adam.   So does the old man fear if he has to use the restroom that he might be knocked over on the way?  Does the young mother have to miss part of mass because she can’t use the room that was designed to allow her to comfort her fussy baby and still be in attendance? 

I have often observed that the cruelest thing about our daughter Rachel’s autism is how her behaviors make her world smaller.  She can’t go camping like other kids, she can’t go to sleep overs, she misses a lot.  I hope that the Race family can find some solutions that work for them and for their parish.  Perhaps they can alternate masses between the parents so one can stay home with Adam, maybe they can find a special needs mass that would work better for them, maybe they can take Adam to a week day mass.  It is sad and unfair that Adam can’t attend mass with his family as they have been accustomed to, but it would also be unfair to ask the entire parish to have to attend mass in the situation describe in the news articles.  This is one of those times where life is just unfair.

(I originally posted this yesterday, but a lot of incoming links have been coming to this post so I am bumping it to the top)


Autism · rants

A little more about Adam Race

Adam Race is the young autistic man in Bertha, Minn.  

The Church of St. Joseph in Bertha, Minn., filed a temporary restraining order barring Carol and John Race from bringing their 225-pound son, Adam, to church. An affidavit alleges Adam struck a child during mass, fought efforts to restrain him, pulled an adolescent girl to his lap and revved the engine of someone else’s car. A parish statement said the legal move was a last resort after church leaders tried to accommodate and mediate, but the family refused.

On Monday, after her court hearing was delayed until early June, Carol Race spent the day lining up legal help and giving interviews to national media.



My latest update on this story is here.

It is funny how quickly thoughs and feelings can change.  While I disagree with Carol Race’s actions regaurding the media her own words about her situation are worth more than mine. 

If for some odd reason you really want my thoughts on the whole situation they are much better expressed here.


This is difficult and sad on so many levels, but lining up new interviews is not going to resolve the issue for her family.  My sense is that the Diocese of St Cloud would have never gone forward with a restraining order without knowing pretty solidly that they had a good case if it goes to court once it was violated.  Anyone with half a brain would see that this would be very bad publicity if it got out of hand.  All of that together makes me think that the situation in the parish had gotten very bad and the priest had exhausted all options.  I pray that this can all work out for the best for Adam, his family and the parish.

(Yes, I have serriously edited this post.  I was angry when I first wrote it, not just at Mrs. Race, but also at the media and how they have turned this into a “faith” issue when it is really not.)

Autism · Faith in Action · My world · Uncategorized

Can my autistic child receive communion?

Rachel dressed for mass
Rachel all ready for mass

 The answer is a qualified yes.  From Guidelines for the Celebration of the Sacraments with Persons with Disabilities


19. The eucharist is the most august sacrament, in which Christ the Lord himself is contained, offered, and received, and by which the Church constantly lives and grows. It is the summit and the source of all Christian worship and life, signifying and effecting the unity of the people of God, providing spiritual nourishment for the recipient, and achieving the building up of the Body of Christ. The celebration of the eucharist is the center of the entire Christian life (Canon 897).

20. Parents, those who take the place of parents, and pastors are to see to it that children who have reached the use of reason are correctly prepared and are nourished by the eucharist as early as possible. Pastors are to be vigilant lest any children come to the Holy Banquet who have not reached the use of reason or whom they judge are not sufficiently disposed (Canon 914). It is important to note, however, that the criterion for reception of holy communion is the same for persons with developmental and mental disabilities as for all persons, namely, that the person be able to distinguish the Body of Christ from ordinary food, even if this recognition is evidenced through manner, gesture, or reverential silence rather than verbally. Pastors are encouraged to consult with parents, those who take the place of parents, diocesan personnel involved with disability issues, psychologists, religious educators, and other experts in making their judgment. If it is determined that a parishioner who is disabled is not ready to receive the sacrament, great care is to be taken in explaining the reasons for this decision. Cases of doubt should be resolved in favor of the right of the baptized person to receive the sacrament. The existence of a disability is not considered in and of itself as disqualifying a person from receiving the eucharist.

21. Eucharistic celebrations are often enhanced by the exercise of the diverse forms of ministry open to the laity. In choosing those who will be invited to use their gifts in service to the parish community, the parish pastoral staff should be mindful of extending Christ’s welcoming invitation to qualified parishioners with disabilities.

When we were looking into First Communion for Rachel we wanted two things.  We wanted to follow the teaching of the Church as hard as it can be sometimes when your child is disable there are things that won’t work for them, if it was determined that Rachel lacked sufficient understanding or was unable to receive reverently we would have accepted that and trusted that God would bless her life in other ways. But we wanted our child to be able to participate as fully as possible in the life of the Church. 

I was really sadded by the story of an eight-year-old girl who was intolerant of wheat and the way her mother decided to deal with the issue of her daughter receiving communion.  The only valid medium for the Eucharistic bread is wheat.  For those who can’t consume wheat they may receive the wine only and that is valid, every bit as much as the reception of bread alone.  What bothered me so much about the above news story was how the mother acknowledged that she knew that her daughter could receive the wine, but in her opinion an eight-year-old shouldn’t ingest any alcohol and so the entire Church would have to change the dogma of two-thousand years because she didn’t want her daughter to have a miniscule taste of wine.  “It’s not appropriate for children to drink alcohol,” she said. “Even a sip.”   The last thing I wanted to do when looking at this sacrament for my own child was to become so caught up in what I wanted that I missed what was resonable and right.  So the question of Rachel understanding that the host was not just a little snack weighed on me heavily.

There were some signs that Rachel did understand.  She had always been very caught up with food.  One cookie was never enough.  It was always surprising to me that she had never reached for or grabbed a host when I went to receive Communion.  But reason suggested that since she never had one she might not see them as food.  I was somewhat comforted by the idea that in “Cases of doubt should be resolved in favor of the right of the baptized person to receive the sacrament”.  I talked to my priest, to our Diocese director of the Office for People with Disabilities and to the Lord in prayer.  But in the end it was God, through Rachel, who let us know that she understood enough to receive.

 My small bits of advice gleaned from what I have read and my own experience:

  1. As your child approaches the age typical in your parish for First Communion speak with your priest and/or the person responsible for religious instruction in your parish.  Go in with an open mind and heart and explain your child’s situation as fully and objectively as you can.   Listen to what they say and consider it thoughtfully.The vast majority of priests want to serve their parishioner and they want to serve the Church and to do both faithfully. In my experience it has actually been the more liberal priests who are the ones most likely to say that your child shouldn’t participate in the Sacraments at all.  I have heard several mothers say that they went to Fr.             and he said their child didn’t need the Eucharist (or reconcilliation).  Sometimes going back with Guidelines for the Celebration of the Sacraments with Persons with Disabilities in hand is helpful.  Generally their reason for refusing is some idiotic banality about how “your child is so close to God already because their are disabled they don’t need to receive Communion.”   Don’t buy this, we all need grace.   It is one thing if your child really doesn’t understand that this is a special thing, a holy thing, and would not approach the sacrament with reverence, but not some fluffiness about not needing it.
  2. If you can not come to some agreement at the parish level don’t be afraid to go to the diocese.  I wouldn’t say just go straight to the Bishop, but if you need to you need to.
  3. When it is decided that your child is capable of receiving the Eucharist there are some wonderful resources for helping your child prepare. Meyer Johnson has communion symbols available for their products.  We used these to help create a social story for Rachel.  There are also some good books available for First Communion with colorful pictures and simple explanations.
  4. Test drive with an unconsecrated host if you think there is ANY chance that your child will spit it out or not eat it.  Reverence for the Body of Christ has to come above all else.  I know there are a few people who might think that sounds harsh, but if we don’t believe in the Eucharistic miracle what is the point?  I know personally the hurt that pulls at your heart when you realise that your child can do something because of their disability and how much worse it is with those lovely rites of passage like First Communion, but we are talking about the actual presence of Christ and the reverence that demands must trump parental sentiment.  When we were preparing Rachel for her first communion we brought home a half a dozen unconsecrated hosts and she was happy to eat it and seems to like the flat, tasteless breads.   I know that for some people with autism the texture is off-putting.  Be sure to let your priest know if a smaller bit is better.  For the rite to be valid only the smallest bit is needed so be sure to explore that option before the day if that seems appropriate. 
  5. You can also validly receive the wine alone.  The same caveat applies.  Be sure that your child won’t just spit it out, but if the bread is not working for you that could be an option to explore.  Your priest will most likely be happy to work with you on this.  Most parishes that I have been in have allowed the children to try a tiny sip of the unconsecrated wine before they experienced it in mass.  Some children really don’t like the taste and no priest wants to risk desecrating the host.
  6. If a packed First Communion mass would spell disaster for you First Communicant talk to your priest about about your child either receiving their First Communion as part of a regular mass or communion service.  Sometimes a small weekday mass works better.  Or see if your Diocese has masses for people with disabilities that might serve your families needs.


Finally, the Church wants to serve your family and your child, each individual member of the Body of Christ.  At the same time She is also trusted with safeguarding the sacraments and traditions of the Church.  Most priests, the US Bishops and Rome all echo that every being, no matter their state in life or their disability is of infinite worth, a full person of dignity and worthy of the utmost respect and they want each soul to participate in the sacramental life as much as they able to within the limits of their understanding and capabilities.


Autism · My world

Autism and CNN part two

Since we don’t have cable we didn’t catch any of the spots that CNN did on autism yesterday.  Rachel had an appointment with her psychiatrist this morning and I spoke with one of her case workers.  We talked about autism in the media.  I am mostly annoyed at the way the media reports on autism in that what I see reported doesn’t reflect what I see in severely autistic young people, including my daughter.  Rachel’s caseworker is more annoy about how treatments are always “over promised”  leaving parents without the means  to try every new thing feeling as though they have failed their child.

CNN’s videos can be seen here.  It is  hard sometimes to watch parents talk about their autistic children.  All our situations are so different and yet there is this string that runs through so many of the stories.  Of course I identify with the parents who’s children are teens.   I wish though there could be a  few more stories about how very, very difficult it can be to deal with autism in the more sever forms.   Oddly enough Law and Order once had a show about abuse at a treatment center for autistic youth with self injurious behaviors.   I think this is the only time I have seen that end of the spectrum represented, and it wasn’t even represented that well.

Autism · My world

Autism on CNN

It appears this week that CNN is going to do the miraculous and pull down “The wall of silence around autism”. 

Now I will give you that my experience with autism has made autism very much “on the radar” for me, and I suppose there are some people out there who really haven’t heard about it all that much, but, despite the fact that raising the general awareness of autism is a good, I can’t help but be leery.   The media love to showcase autism cases where the autistic individual is relatively high functioning.  Now I could be wrong and we might see the whole spectrum represented, but I am not holding my breath.

Autism · Caritas · Faith in Action

Autism and Catholic Life

Being Catholic and the parent of an Autistic child has led to many questions that are unique to the parents of children with disabilities.  “Should my child receive communion?”,  “Does my child need Confession?”, “Is it a sin for us to miss Mass because of my child’s possible behavior?”, “Does the Church have any direction, programs, help for us?”.   In order to help anyone out there also searching for answers I am sharing what we have learned over the years.

Going to Mass

It is not uncommon to hear: “I feel uncomfortable bringing my son to Mass.  I know he is going to make sounds, he might get upset, it would be one thing if he was a baby, but at seven people stare.  The stares are unbearable.”  Parents all too often stop coming to Mass with their child with an emotional/behavioral disability out of concern that they will be disruptive.  In some cases I think this can be warranted.   But in general,  most parishes will be very welcoming to a family if they know what is going on.

When we moved parishes after purchasing a new house we were very nervous about how Rachel would be perceived, what other people would think as she started hooting at the ceiling fan, what if she had one of her melt-downs?  When we took our pew we were delighted to see another large family with a child who had those tell-tale signs.  Instantly there was a bond, we became friends.  The small parish was very open to its two little angles with the odd behavior quirks.  The priest was accommodating and loving to the girls and we were relieved and happy to find an accepting place.   You never know when you will be the family that gives hope of acceptance to someone else.

Don’t be afraid to call your local parish and schedule an appointment with the priest to talk about your disabled child.  While there are always the few priests who give horrendous advice most priests are open and caring people who want the best for your child and your family.  You may find there is one or another mass that is shorter, or the music more to your child’s liking, or even one where a family with a disabled child is already in attendance.

In some dioceses there are special programs for disabled people and their families.  In Oregon there is  The Office for People with Disabilities.  They sponsor “adapted liturgy” which accommodates those who need something other than the usual mass.  Pretty much anything is accepted there because everyone  is in a similar situation.

If mass is simply too over-whelming for your disabled child you might have to miss mass.  It is a valid exception to the weekly obligation to be caring for a child who can not attend mass.  Most priests will be understanding of this, some will let you receive communion for the home-bound especially if you are a single parent.  You also might get creative with your mass attendance: consider alternating parents staying home with one child while the other attends mass with the rest of the children, one parent attending a different mass, attending mass during the week while the disabled child is in school, or scheduling respite care so that the rest of the family can attend mass together.

The Sacraments

note: I am not a cannon lawyer, I am sharing what I have read and been told as a starting point.  Please talk to your local priest and diocese about the exact procedures in your community. You also might read Welcome and Justice
for Persons with Disabilities
from the USCCB and “Guidelines for the Celebration of the Sacraments with Persons with Disabilities“.  I have pulled some quotes from “Guidelines” and added my comments below.

Baptism: Every child, no matter their disability is entitled to baptism.

Communion: This is the one that was very difficult for us.  “It is important to note, however, that the criterion for reception of holy communion is the same for persons with developmental and mental disabilities as for all persons, namely, that the person be able to distinguish the Body of Christ from ordinary food, even if this recognition is evidenced through manner, gesture, or reverential silence rather than verbally.”  For Rachel this was a hard thing to tell, she is almost non-verbal and finally it took a small miracle for us to see that she did have some understanding of the sacrament.

I have added two posts that more fully explain some of what we have done for First communion:

Can my autistic child receive communion


First communion Social Story

Confirmation: “To receive confirmation a Persons who because of developmental or mental disabilities may never attain the use of reason are to be encouraged either directly or, if necessary, through their parents or guardian, to receive the sacrament of confirmation at the appropriate time.”

Confession: “Only those who have the use of reason are capable of committing serious sin. Nevertheless, even young children and persons with mental disabilities often are conscious of committing acts that are sinful to some degree and may experience a sense of guilt and sorrow. As long as the individual is capable of having a sense of contrition for having committed sin, even if he or she cannot describe the sin precisely in words, the person may receive sacramental absolution. Those with profound mental disabilities, who cannot experience even minimal contrition, may be invited to participate in penitential services with the rest of the community to the extent of their ability.”

Anointing of the Sick: “Since disability does not necessarily indicate an illness, Catholics with disabilities should receive the sacrament of anointing on the same basis and under the same circumstances as any other member of the Christian faithful”

Community and Parish Resources: Don’t be afraid to ask.  You might discover there are many resources in your community for your family.  Even ask at your child’s school or pediatrician and don’t be afraid to share with them what you are doing for your child’s faith life.  We found that our daughter’s teachers have often been very helpful in finding resources for helping Rachel in mass (social stories, board maker pictures, sharing what they know other families are doing).

Your Dioceses website should have links to any special ministries they offer, and as more families request these things more of them are developed.  You may find your parish or a neighboring parish has a support group or would like to form one.

Last thoughts:Having a child with a disability can be a blessing and a cross.  Keeping your own faith-life alive, finding time for prayer, time for mass, time for anything can be a struggle  but the grace and peace of God can be that one thing that keeps you going.  I hope that anyone who has read this will keep us in your prayers as I will prayer for those who read it.


Autism part two

Being the nerd that I am I like to look at my blog stats to see how people get here.  The autism post early this week has led to some interesting searches finding me.  Phrases like “Autism parents despair”, “My autistic teen” and “Autism failure” have popped up in my referring searches.  I want to say hello to those who have found me because of the autism article and I think I have a little more to say.

My daughter Rachel is 14 and lives in a residential house for autistic and behaviorally challenged teens.  She has been there almost two years.  We are very luck to have a house that meets Rachel’s needs and is so close to us.   Rachel takes two types of medication for her autistic symptoms and a third to suppress seizures, she has only had one, but it nearly killed her and we are disinclined to take any chances. Rachel’s current situation is a case study in “never say never”.

Not so many years ago I claimed I would never medicate my child to deal with her behaviors.  I was also certain that I would never place her in an institutional or residential placement.  Then puberty approached and that all changed.   Autism for us has been a series of coming to terms with things only to have to come to terms with them again.  When Rachel was first diagnosed she was classed as mildly autistic in most areas and severely autistic in language, especially expressive language.  Rachel was always affectionate, you could get her to look at you, she had imaginative play, but the ability to communicate wasn’t there.

The experts I talked to couldn’t tell us much.  They have therapies, medications, diets, treatments and a variety of strategies, but they also would say, when pushed, that no one knows what exactly will work or not for each child.   I remember one psychiatrist saying “support groups for very young children with autism are always so hopeful.  I have never met the parents of an autistic three year old who didn’t say their child was ‘mildly’ or ‘Moderately’ autistic.  By nine that changes.”  He was so very right in that.  A mildly or moderately autistic child will likely respond to early intervention and be able to function reasonably well in a class room and life in general.   I have met some parents who tell me about their autistic four or five year old who is doing school work a year ahead but has some social quirks.  I don’t doubt they have a diagnoses of autism, but our children are on different ends of the spectrum.  Eventually those of us with severely autistic children have to face that this is the hand we’ve been dealt. 

There are those parents who are firmly set in denial.  The parents who’s three year old child is licking the carpet and has three functional words and say their child is “mildly autistic”.    I think I was one of them.   I kept hoping things would get better.  We did the therapy, the special classes, the in home therapy.  The whole gambit.  It is draining both for the parents and the child.  But you have to do it because, everyone tells you, this is the only hope for your child.   And it is hard to stop at some point and say “This isn’t working”.   Some parents stop later than others.  I met a woman and her nine year old autistic son at the pool last year.  He was non-verbal, he occasionally hit himself in the head while his mother and I were talking,  he couldn’t follow basic directions.  Mother claimed he was “moderately autistic” that he was doing behavioral intervention, and had been since two and that it was working really well for him.  She was sure he would lead a full and active life.  My heart broke for her.

 My heart breaks for myself as well some days.  I go through phases where things seem hard and then seem better.  But I can always look back at some words of wisdom offered by a friend of mine.  “Darcee,” he said, “don’t be sad for Rachel, there is no reason to feel sad for her.  She likes herself, she is happy most the time as happy as most kids her age.  The person you are feeling sad for is yourself, Rachel is fine.”

And that was so true and still is.  Rachel has times where she is upset or sad.  But so does any 14 year old girl.  She struggles at times with letting people know what she wants and how she feels.  More so than most her peers, but her life is also somewhat more simple than theirs.   I worry for her, what will happen to her if she out lives us.  How will we provide for her care.  But those are my worries not her’s.  Rachel’s life looks very different from her peers’ lives, but it isn’t a bad life and it is her’s and she is mostly happy.

Autism · Blogs I Know · My world

Autism hope and despair and everything in between

I have a 14 year old daughter who is severely autistic.

This has been, in ways, the defining statement of my life.   My daughter is severely autistic.  This morning I was reading at Real Learning and found this video : What Kind of World Do You Want  .

This brought up so many conflicting emotions for me. earlyintervention3.jpg

Because this sentence is true and yet it is NOT true for every child.  There are some, I dare say many autistic children, while they are helped with early intervention and intensive therapy,  are not brought up to the level where they can lead “full and active lives”.   As a parent of an autistic child I latched on very deeply to the idea that if I did enough Rachel would have a normal life.   I was offered more hope than possible every year.  Finally the hope hand-outs stopped but not until Rachel was in Jr high. 

I think all parents hold onto a certain amount of guilt when it comes to “doing enough” for their children.   Everything from baby enrichment classes to SAT prep and sports, and dance, and art, and camp.  Homeschool parents get to pick up a special type of guilt being responsible for our childrens’ entire education.  We can all look back at our “parent-of-the-year” moments where we over reacted or said the wrong thing.  Our childrens’ failures in a very real sense feel like our parenting failures.  But with autism there is a deeper sense of failing.  When every story about autism published is the miracle that shows an autistic child that with love and dedication the parents where able to find the “cure” and now their child is a happy fully functioning teen or adult.  Where did I go wrong?  What more could I have done?  I have failed my child.  My child is not cured the failure is therefore mine.

My daughter is 14 and still severely autistic.  Did we not try hard enough?  Did we not do enough?  If Rachel was dealing with Down’s Syndrome would I be looking at myself in the mirror asking these questions?  Probably not, because it is well acknowledged that Down’s is a genetic disorder, there is no miracle cure.  But with autism, the causes are so elusive and the hope built up so high that self recrimination becomes very reasonable.

My thought is that as autism is more studied, as the “bubble” of autism ages that we will see many many more cases where early intervention did NOT fix it.  Where parents did all they could and still they are looking at the teen years with autism as a very real part of their child’s life.  I don’t exactly resent those parents who have found success with early intervention and intensive therapy, but they speak  very loudly and the world likes to listen to them.  Those of us with sadder stories speak quietly or not at all.

But we need to speak.  We need to start speaking to one another and to the media at large.  Just as our children needed money and research and acceptance with their diagnoses and early intervention they also need as adults.  They need safe housing, they need law enforcement to be trained so that tragedies are avoided.  We need laws changed so that our  adult autistic children can receive funds for their housing and treatment without parents loosing their parental rights and the right to advocate for their children or make decisions about their lives.  These are problems, real problems, they need addressed every bit as much as early treatment.